The journey of Dylan a true hero!

My little man

Dylan had a seizure and busted his head open, he got got seven staples.

Dental work

On vacation wasn’t to happy about it

Purple for world epilepsy day.

This how he fell asleep

THETRUESUPERMAN

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About

Our names are Jeff and Terri King and 11 years ago we had a son who was born with a rare chromosome disorder. He was born with a triplication of chromosome 15 which caused him to be severely intellectually challenged. Dylan didn’t start walking until he turned three years old. He attends a special school where for the first seven years of his life he was learning to read and write his name. He was a very happy little boy who enjoyed watching cartoons and singing. He used to talk and was very humorous. On April,18th 2010 Dylan began to have intractable seizures. He was put on several different medications that didn’t work particularly well. One even almost killed him by giving him Stephen Johnson Syndrome. He would have between 50 and 70 seizures a day. We talked to his neurologist and suggested that we wanted him to have a Vagus Nerve Stimulator inserted. The Vagus NerveStimulator is like a pacemaker that is in theory supposed to control seizure activity. The surgery went well and the stimulator worked for about 2 months, but he would have some seizure activity. We were thrilled though because for the first two months he had about 4 seizures and he was doing well. After the third month though he began to have more seizures and once again they became more frequent. He was now having between 15 and 25 seizures a day. They begin to affect his cognitive skills and he lost his ability to speak and for a while he couldn’t even walk and was in a wheelchair. We found out about this new medication and had his neurologist prescribe it to him and it dropped his seizures to about three a week. We were thrilled and thought for sure with the combination of his two medicines and the Vagus Nerve Stimulator would keep the seizure to a minimum. We were wrong he is now having about 5 seizures a day and his cognitive skills have never returned. Dylan has broken dining room chairs and put holes in my walls from having seizures from where he has fallen out. We are constantly saying that we need a Dylan Fund to Dylan proof our house. It is our hope that we could raise some money to perhaps help with some research into this rare chromosome disorder, but we also could use some help to build a special play area in the house for Dylan while proofing it as well. We also could use help in getting a walk in shower that would help with bathing Dylan since he cannot bathe himself. He is still in diapers so you can imagine our finances are pretty tight. I work in the Anne Arundel School System where I work as a Substitute teacher and I am currently in college to become a special Ed teacher. My wife is also taking up college courses in special education. I believe that we were chosen for this field because of Dylan. Thank you for listening to our story and thank you for your donations